Has anyone out there been tested for Sphincter of Oddi Dysfunction? Is this a major test? Are there alot of health risks involved? Is it an outpatient thing? Can anyone explain it to me. I've heard that you can get further complications from it with the pancreas, etc? And, you should only have this done if absolutely necessary and with an experienced surgeion. Is this true?

Thanks you

Has anyone out there been tested for Sphincter of Oddi Dysfunction? Is this a major test? Are there alot of health risks involved? Is it an outpatient thing? Can anyone explain it to me. I've heard that you can get further complications from it with the pancreas, etc? And, you should only have this done if absolutely necessary and with an experienced surgeion. Is this true?

Thanks you

JJ..

I think I just answered another post from you, but if not, here goes ;)...

The test to diagnose SOD is an ERCP with Manometry. There is a risk of Pancreatitis with this test, so it is only done when absolutely necessary. If you should have it done, make sure the GI doing it (it is not a surgeon that does this test) has plenty of experience.

Has anyone out there been tested and diagnosed with spinchter of oddi type111? If so did you have a EUS test done first. I have had two EUS tests done, pancreas is normal. One doctor is willing to do ercp with manommotry, other ones I've seen don't think I should. I have horrible right sided abdominal pain everyday for a year and a half. My pain does not radiate between shoulder blades as many people with sod describe. Pain is worse with eating, but can be bad even if I have not eaten. The pain feels like there is a blockage, like something is obstructed, almost feels like an internal boil. anyone have similar symptoms with sod diagnosis? any help greatly appreciated.

Has anyone out there been tested and diagnosed with spinchter of oddi type111? If so did you have a EUS test done first. I have had two EUS tests done, pancreas is normal. One doctor is willing to do ercp with manommotry, other ones I've seen don't think I should. I have horrible right sided abdominal pain everyday for a year and a half. My pain does not radiate between shoulder blades as many people with sod describe. Pain is worse with eating, but can be bad even if I have not eaten. The pain feels like there is a blockage, like something is obstructed, almost feels like an internal boil. anyone have similar symptoms with sod diagnosis? any help greatly appreciated.

I've never heard of a sphincter of oddi "type 111." Who told you there was this "type 111?" I searched the internet and did not come up with anything either.

Have they checked your gallbladder and liver as well? They need to check everything else and do every other possible test before doing an ERCP. If you don't have pancreatitis now, you will more than likely after that test.

Edit to add: Do you mean Type 3?? It just dawned on me after sending my response.

What other symptoms are you having, if any? You symptoms do not sound like that of SOD, but more gallbladder.

Hello everyone. I have SOD. I have never heard of classes associated with it. I went to a pancreas specialist that routinely did pancreatic duct manometry. My symptoms were immense pain with eating. Pancreatic duct manometry should only be done by experienced gastroenterologists. There is a high chance of pancreatits after this procedure and that risk significantly increases with inexperienced doctors.

stock.. i never had pain between my shoulders either. If you havent had a gallbladder work up, you probably should, but I assume you have. You can have problems with the gallbladder duct as well. I had a EUS as well and all was normal. I actually had normal scans on everything which is what made it so difficult to diagnose. It makes sense though since it was a Oddi dysfunction because you dont see that on scans. That is what lead me to the duct manometry.

hi sam. thanks for writing back. yes I did have my gallbladder removed but it did not cure my the main pain I have in right upper quandrant. I have had two eus test three cat scans two mrcps, two regular endoscopies, two colonoscopies, multiple bloodwork, liver enzymes were elavated a few times but that also may have been attributed to medications I was taking. my most recent blood work is normal. did you get pancreatitis from doing the manommatry? did they cut the spinchter, and have you gotten relief? also did you have pancreatitis or elevated liver enzymes before you did the ercp?

thanks

Stock

Hi everyone,

Has anyone gotten a diagnosis from doing a PET or spect scan that at did not show on other tests? what about gastroparesis - has anyone with intense rt sided pain been tested and found this to be the problem? has anyone been told they have IBS or functional dyspepsia and have these diagnosis lead to medications that have helped. I have tried many medications for ibs but nothing has helped. I have a hard time believing this is what it is. the pain feels too concentrated in a particular spot and it is very intense. I have had IBS in years past which felt like bad stomach cramps but this responded well to medication and got better.


Stock

Stock.. I had multiple scans as well.. all normal. EUS, MRCP's, scopes, CT's, etc. The whole works. They first attempted doing a gallbladder duct sphincterotomy with no success. I only had elevated liver enzymes once in the beginning but then only had elevated pancreas enzymes. If you are not having elevated pancreas enzymes, I would say it is NOT worth it to have manometry done. It is way too risky. I always had mild cases of pancreatitis going into my ERCP's and yes anytime they messed with my pancreas duct or did the manometry I would get pancreatitis. Thankfully I always got mild cases of it and after a few days in the hospital I was good to go. A PET scan will not diagnose SOD. I also have dyspepsia that is treated with either nexium or protonix. And I also have gastroparesis (I got a stomach virus that caused me to have gastroparesis and pancreatitis). You can have a gastric emptying test done to diagnose gastroparesis. I cant say that gastroparesis is painful unless i ate something I shouldnt have. But pain is not the most indicative sign of gastroparesis, persistant nausea and vomiting is. Hope that helps. My words of advice are, dont touch the pancreas unless you absolutely have to, its a very finicky organ.

Hi Sandy,

Your symptoms just do not sound like SOD to me...the pain pattern for instance. The test that can really diagnose SOD is an ERCP with Manometry. They can also do an MRCP to see if there is a blockage.

May I ask where you live? We may be able to suggest a specialist for you to see in or around your State.

Hi, thanks for writing back. I live in northern new jersey. I be glad to hear of any specialist you may know of. I did have an MRCP which was negative. My pain mostly feels like extreme irritation, like an severe open wound, on my right side. sometimes it feels like there is a golfball stuck in there as if something is going to burst. I also have pain which feels like an internal bruise on my left side, but this has developed in the last couple of months, whereas the rt pain has gone on for over 16 months. my endoscopies showed some gastritis but none of the doctors I've seen think that this is the cause of my pain. Of note also is that even three nexiums or protonixs a day does not ease this pain. My diet is pretty good, and this pain does not really depend on what I eat. Coffee can exacerbate it, but even when I stopped coffee for four or five days this has not stopped the pain. Just thought i give some more details. what does spinchter of oddi pain feel thanks stock

Sam,

Did the ercps help solve your sod problem though. I'm afraid that if I have this the will never find the source of my pain if they do not do this test. Although I would not want to get pancreatitis , if this test showed sod and they cut the spinchter and this relieved my pain it seems that this would in the long run be worth it . what else is there to do? i feel totally wrecked from this pain. My life revolves around it. Also, is the pain from pancreatitis manged with pain meds effectively in the hospital? does getting pancreatitis once make you prone to getting it again? stock66

Sam,

Have you known people with worse experiences from having manommotry done?

I have these same symptoms and the same pain (sometimes my pain scale can hit an 8). It is best in the morning and gets worse at night. It will keep me awake and the pain will burn through percocet and vicodin (NOT taken at the same time).

Even though my pain level really sucks and some days its so hard to function...there is no way in heck I will TOUCH an ERCP until I am crawling on the floor. When I had my Gallbladder out I got hit with a MILD pancreatitis attach. That mild attack is more pain then I have ever delt with in my life. Yes, it even has surpassed unmedicated child birth.

Why I state this is...please try every option and rule out EVERYTHING else first and do the ERCP only as your last ditch effort.

I have these same symptoms and the same pain (sometimes my pain scale can hit an 8). It is best in the morning and gets worse at night. It will keep me awake and the pain will burn through percocet and vicodin (NOT taken at the same time).

Even though my pain level really sucks and some days its so hard to function...there is no way in heck I will TOUCH an ERCP until I am crawling on the floor. When I had my Gallbladder out I got hit with a MILD pancreatitis attach. That mild attack is more pain then I have ever delt with in my life. Yes, it even has surpassed unmedicated child birth.

Why I state this is...please try every option and rule out EVERYTHING else first and do the ERCP only as your last ditch effort.

what do you do for your pain? are you able to work? have you ever thought about a pain block?
stock66

I have these same symptoms and the same pain (sometimes my pain scale can hit an 8). It is best in the morning and gets worse at night. It will keep me awake and the pain will burn through percocet and vicodin (NOT taken at the same time).

Even though my pain level really sucks and some days its so hard to function...there is no way in heck I will TOUCH an ERCP until I am crawling on the floor. When I had my Gallbladder out I got hit with a MILD pancreatitis attach. That mild attack is more pain then I have ever delt with in my life. Yes, it even has surpassed unmedicated child birth.

Why I state this is...please try every option and rule out EVERYTHING else first and do the ERCP only as your last ditch effort.

what do you do for your pain? are you able to work? have you ever thought about a pain block? have doctors tought that you may have sod?
stock66

My GP thinks there is a high possibility that I do have SOD however, I also have B12 deficiency and some associated neuropathy that needs dealt with first. Perhaps the pain might be some of the neuropathy, but it might not either. Right now I am going for the least invasive, least probobility of increased pain. I am exausted and depressed and at my wits end...but not desperate enough YET to do the ERCP

Yes I work. Don't ask me how but I do. I am also the PTA vice president at my daughters junior high. I have four children, lots of activities and 40+ work week. Life is HARD right now. Thankfully the kids understand and my boss understands...so when I walk into a wall no one is ordering up a impromptu UA :jester:

What I do for pain is tough it out a lot. My brain is already foggy enough that I really don't like to take any pain meds during the day. Like I said too, my pain starts out manageable in the morning and progressivley gets worse as the day goes on. By the time dinner is done and I am begging them to get their homework done I am almost doubled over (on my worst nights). Most other nights its more of a hunch with my right hand pressing in under my ribcage (because for some reason my subconsciounce thinks that really helps :rolleyes: )

I have tried Darvocet for pain. That does NOTHING for me. I have done percocet. That works relatively well but wires the crap out of me and I stay up all night. I am now on Vicodin which wires me a bit but I can sleep better. I have breakthrough pain on the vicodin on my bad nights though. I have tried Bentyl (Antispasmodic) that doesn't help. The above is what I take AT NIGHT after I get the kids into bed. During the day is ibuprofen all the way which of course does absoltely nothing.

I see a neurologist on the 21st of November to hopefully work out the neuropathy issues. If the URQ pain isn't helped then I may start looking at the ERCP for 2008 [shudder].

I am in the same boat. My last test the MRCP was negative also. My pain is gone in the morning and then gets progressively worse as the day goes on. It is below my rib cage on the right mostly and can go through to my upper back / shoulder. My only option is an ERCP but I cannot even get an appointment at a facility that is equipped to do one!!!!!!!! I am also afraid. All my blood levels are normal Nothng is elevated. If anyone gets resolution please post. SAm I AM did your pancreas heal? Are you still in pain?
Sisty

I find that it REALLY SUCKS that the one test/procedure that could cure our pain is something that could kill us, cause us huge amount of pain and land us in the hospital for weeks on end with the possibility of chronic pancreatitis.

What nice choices huh?

Or we could try and find a pain med that actually works and be stuck on them forever. Anyone else feel a bit discouraged?

I find that it REALLY SUCKS that the one test/procedure that could cure our pain is something that could kill us, cause us huge amount of pain and land us in the hospital for weeks on end with the possibility of chronic pancreatitis.

What nice choices huh?

Or we could try and find a pain med that actually works and be stuck on them forever. Anyone else feel a bit discouraged?

ctweet,

I feel more than a bit discouraged. I feel severely depressed about all this. I can't believe you do all that you do. I feel like such a loser. I'm 41 and have no children and can't fathom bringing a child into this world of pain, although I wish I did have children, I think that if I had already had children when this happened I would be better off in some ways. I'm thinking about getting a pain block. I had a celiac plexus block done which took away my pain for 24 hours, but then it returned. I'm hoping that there is other blocks that can be done. Perhaps you might want to look into that also.

Stock don't think for one second I DON'T GET DEPRESSED. There are days I bawl my eyes out on my husband telling him I can't do this anymore. You aren't alone I promise.

I think my kids and my schedule KEEP me going. It forces me to get up and move and get things done. They are "have to's" for me. Sometimes on moderate pain days I can get busy enough to where it ends up being a mild annoyance. If anything all this has taught my body to have a higher pain tolerance I think. This morning I have been pretty worried on how the day will go. The entire drive into work I had wierd stabbing pains into my Left side which is not the norm. I hadn't eaten anything since yesterday noon time too so I can't blame it on food.

I will inquire about those blocks. My girlfriend had one. She had endo really REALLY bad and she said it worked pretty well. It got her to her surgery date.

I wonder why your block only lasted 24 hours? They must have missed the mark.

Maybe just biting the bullet and going in for the ERCP and getting it over with is the best thing. Maybe in Jan/Feb when things are slow with work and school.

Its day to day for me Stock. Somedays I wallow in the pain and somedays I give myself a mental smack upside the head and FORCE myself. But I do have an advantage too with b12 injections that were started last week.

This is all a mess for all of us. I hope and pray we can all pull through :angel:

Hi everyone. There are so many posts that I cant remember who posted what. Yes I have heard of people getting really really sick with ERCP's. However I personally have had 5 ercps. I got a mild case of pancreatitis after each ERCP but it only lasted a few days. Plus they did procedural ERCPS every time, ie I had to have stents placed which obviously will inflame your pancreas. The time I had the manometry done I was in the hospital for 4 days. Since I have had all of this done, I have gotten complete relief of the pain I was experiencing. I have not had a single flare up. However I had to go through getting a sphincterotomy done as well as have 3 stents placed since I did not initially get relief from the sphincterotomy. My piece of advice to you all, if you are really having as much pain as you all talk about, then it is worth the risk of having an ERCP done. But make sure they are going in there to do something, not just to look. IE either to do the manometry or to just do the sphincterotomy. I had a very hard time controlling my pain, it was controlled in the hospital with heavy narcotics. But one drug that I found worked that I was able to work with was a drug called ULTRAM. It works to block narcotic recepters, but does not give you the side affects of narcotics, but it can- everyone is different. Good luck to you all.

PS hey stock you can respond to everyones posts in one posting, so you dont have to create a new post for each feedback. That way it will cut down on the number of pages in this reply.

Sam
Wow, what a relief to hear your post. My doc said that the ERCP was the last thing I wanted to do, period. I think he doesn't have a lot of faith in Gastro's here in Anchorage that are (his words) skilled enough :( THAT freaks me out!

Can Sphincter of Oddi Dysfunction result in B12 deficiency?

I am sorry to barge into this post, but I am NEVER able to find anyone, who is familiar with Sphincter of Oddi Dysfunction, and I would LOVE to connect with those, who unfortunately know this type of pain.

I had my gallbladder removed in 2005, although the HIDA scan showed no disease or gallstones. The GI dr. told me my gallbladder was kinked, which is why my ejection fraction was very low. So I had that removed in Aug and I got pregnant in Sept. I had no real problems with pain during my pregnancy, but shortly after delivery I began to experience gallbladder-like pain, only it was much more severe. It landed me in the ER on several occassions.

The first time I went to the ER, they treated me with morphine, and I thought I would die right there on the table, because the morphine made the pain so much worse. They ran tests, but couldn't find anything wrong. They wanted to keep me, though, because of the severe amount of pain I was showing. They administered a double dose of Dalodid (sp?), and that is the only thing that lessened the pain. I was sent home.

I made a follow-up appt. with my GI, he reccommended an endoscopy, which showed a build-up of bile acids and gastritis. He prescribed some sort of powder drink. It did nothing. The pain continued. I went to my general doc, begging him to help me. He mentioned testing for Sphinter of Oddi Dysfunction. He didn't say anything about the added risks involved with such a test. We were in the process of scheduling the test when (SURPRISE) I was pregnant, again. I am now 5 weeks postpartum, and still dealing with this pain. Unfortunately, though, I have more health complications to add, now.

The most significant, is that my B12 is ROCK bottom. THe more I read about B12 deficiency, the more I'm learning that it is linked to GI problems - more specifically, the inability of the body to absorb the vitamin due to a lack of intrinsic factor (usually the result of chronic gastritis). So after all of this, my question is - can Sphincter of Oddi Dysfunction result in B12 deficiency?

Seabreezes... my knowledge of B12 does not indicate that SOD can cause B12 deficiency. Hydrochloric acid secreted in the stomach mixes with protein and produces B12. This happens in the stomach but I would assume this happens along the digestive tract as well. That being said I cant see how SOD would cause B12 deficiency. However not sure if you know but pregnancy can cause low B12. Have you gotten B12 shots at all?? They are very easy. I have SOD and have not had low B12. I did however get a shot of it to see if it would increase my energy level after being chronically ill for over a year. One thing you did say makes me very concerned about SOD in you, that you had extreme pain with a shot of morphine. Morphine has been found to constrict the sphincter of Oddi. So it wouldnt surprise me for you to have the ERCP and them find SOD. If you can get it done where they can measure the pressures, as this is most definitive means of diagnosis.

CTweet...I dont know if they have other talented gastros in alaska, but if you can, and i know this is difficult with insurance, but Seattle has very good pancreas specialists at Virginia Mason. That is where I had to go to. Not to mention my doctor was HOOOOOOOOOOOOOOOOOOT!!!!!

Sam_I_am,
Thank you for the response. I was not aware that pregnancy can cause low B12, and I since I had back to back pregnancies (I got pregnant with my second child when I was only 6 months postpartum with the first), this may be why my levels are so low.

I continue to have the severe gallbladder-like pain, and it often radiates straight through to my back. I really don't notice an increase in pain after eating. I feel it on a daily basis, and some days are intolerable, while other days I can at least function. I can see no real triggers for this pain - it just comes on suddenly and can last for several hours.

The first idiot GI dr. that I saw diagnosed me with IB syndrome (umm, okay). Obviously, the treatment for IBS didn't alleviate any symptoms. That is when I went back to my very knowledgable general preactioner, who thankfully, brought up Sphincter of Oddi. I had never heard of it prior to this. I have done some reading on this subject (there is very little). It really does seem as though this is my problem.

I guess my next question is this - if I can learn to live with this pain, should I? I mean, it seems like the testing and treatment for SOD are compounded with negative side effects, namely the potential for developing chronic pancreatitis.

Sam: Ha ha you are so funny (c: A hot doc would make the process a little more bearable huh? :D

I am going to see the neuro on Weds now. I am going to get a handle on my B12 issues first (as long as I can live with the pain) and see if that helps first. I am really procedure shy at this point. Funny you should mention Seattle. My entire family lives a tad South of Seattle and they all keep yelling at me to come down for treatment to the "United States" and see a "real" doctor. I keep reminding them that Alaska is still the United States...but I digress!

That may end up being an option. Really, I would rather take a week or two off and see my family and get treated instead of taking a week or two off and live in the hospital for a pancreatitis attack.

I had a horrible night on Friday and yesterday. I am wondering if the pain killers don't work because it may be constricting the SO like you mentioned above.

Isn't your health FUN????

Seabreeze..whatever I find out from the neuro in regard to this pain Ill post and let you know. The appt is weds. Not to long to wait.

Seabreeze.. you know that is a hard question. I would guess for you I would probably see what happens after your pregnancy and your body has a chance to get back to normal. You do know how pregnancy happens right ??? (hehehe sorry I had to inject that joke). Pregnancy can often screw up your digestive tract. But honestly, if you are actually getting chronic pancreatitis then I would guess that you would need to get SOD fixed, because you put yourself at risk for damaging your pancreas. Having the ERCP to measure your pressures puts you are risk for acute pancreatitis, not necessarily chronic pancreatitis. So it brings you back to the risk benefit. And that is a decision that a good gastro doc should make.

CT if you do decide to come to Seattle definetly let me know, and I will give ya my hottty doctors name. Like you said, if you have to go through it at least you can have some eye candy to look at in the process!!!

CT: I hope you appt. went well, and that you left with some definitive answers.


Sam_I_Am:
I wish I lived on the west coast with a hotty GI doc. I live on the east coast, though. LOL - about understanding the dynamics of conception. Ha. Ha. Actually, I had two ectopic pregnancies before having my back to back pregnancies, and I only have one working tube. It was a miracle I had my first DC, and we really didn't think we needed contraception due to my issues. But - SURPRISE! LOL. We are definitely careful, now! Ha! Ha!

Anyway, I'm having a bad pain day. Urg. These are the days that I really want to pursue the ERCP. Yesterday I only had mild pains. I can live with those.

Here's my new question for the day.
Is the purpose of SOD treatment to relieve pain, or is it to prevent other medical problems? If so, what type of medical problems can result from untreated SOD?

I (thankfully) have never had a pancreatic attack (pancreatitis), and I have had SOD since Aug. 2005. At least I don't think I have - I'm sure I would know it.

It is so refreshing to speak with other, who understand this pain.

Seabreezes.... if you have SOD how have you not had pancreatitis?? I guess that brings me to the question of how do you know that you have SOD?? Is this what a doctor thinks?

Seabreeze: Thank you for asking but my appt DID NOT go well and I mentally FIRED the neurologist before I even left the appt. I am at work now, Ill post more tonight. He was a jerk.

Sam_I_am:

My doctor thinks this is what I have, based on symptoms, location and type of pain. I haven't been tested (because I got pregnant), and now I'm wondering if the testing is worth it. I didn't realize that pancreatic attacks were inevitable with SOB. Maybe I don't have SOD, afterall. I obviously would know if I had an attack, right? Crap - what could this be, then? It feels exactlyt like gallbladder pain (only intensified) and it's located under my scar (they did check for scar tissue, but found none).

CTsweet:
Oh, no. I'm sorry to hear that. What happened?

My B12 is still low - I can feel it. My hands and feet are so tingly. I wish my dr. would just give me the injections. I hope I don't bottom out before my next blood test. It's already way low.

Yep makes all the sense in the world. I guess I meant to say how did she manage to NOT get pancreatitis if you have SOD. Guess she was pretty lucky, wish I would have been. Hang in there seabreeze, you'll get answers soon enough. But it does seem silly that they wont just give you a B12 injection, I mean they are simple and almost harmless. You've got to be tired. Good luck.